Jana, I have read so much on both ALS and MG and I would love to hear the story of your friend that you followed. Is there a site (like a blog) where I could read about him? Thank you for the two sites..I have read a lot, but had not seen those two site. My main reading after doing the "Dr. Google" thing was on a another ALS Forum and that has been very informative. Too afraid to post at this point over there. It seems to gain MANY people seeming to want to have ALS. And I do not want to come off as a "looking for a disease" kind of person. Thank you for your prayers...We can go through anything as long as we are going through it with our Father.

Desert Flower, YES!!! That does help. I have often heard less is more even with medicines. I know wonder why they would have him lower the pills to 2 and not cut the mg's in half instead. (((I hope I do not have this wrong, when he gets home from work, I will ask him.)))

The encouragement this has brought me today is unreal. Blessings to each of you that respond...you are WONDERFUL!!

I met the family through the wife's blog. Originally, the doctors thought he had MG. It took quite a while for them to diagnose ALS. It is sort of a process of elimination. He died last spring -- only 38 years old. Soon after, his wife deleted her blog. I think it may have been too painful -- and they had children. I learned sooooo much from her blog -- they were such STRONG Christians -- and so open about what was happening to him. I think about them often.

The thing about blogs, forums, and groups for ALS patients.............you don't usually have this for very long (several years) -- and part of the time you aren't able to really communicate very well. So, I would think that many ALSers would rather be doing OTHER things -- ANYthing else but spending time on a computer talking about being sick. MGers on the other hand -- we are in this for the long haul -- normal life spans. We have years to observe our symptoms, figure out how to manage things, make friends with other MGers -- it's really just "different", if you see what I mean.

I would think that ALS patients would be more likely to have something like Caringbridge sites -- but, you would have to know their names to have access.

You might want to set a "google alert" for "ALS" and "Lou Gehrig's Disease" -- that way you MIGHT find someone's blog.

When is your fiance's next appointment? If I remember correctly, the docs start looking for muscle fascillations -- may make your guy put on the gown and watch his arms and legs with GREAT intensity. Especially the weak arm/hand.

Found some blogs:
http://kathysalsblog.com/

http://friendsofjasonorpe.org/jasonblog/

http://alsboy.com/

http://alschronicle.blogspot.com/

http://myjourneyals.wordpress.com/

Rough reading here -- maybe in these words you will find something that is TOTALLY alien to your fiance's symptoms -- and you can sigh with relief!!

Hi Jana!! Thank you so much for all this great information and the blog sites. I look forward to reading them. It will be Monday before I do..Have some what of a busy Sunday. His next appt. is in March..so we will wait and see, seems to be the norm!! I do appreciate everything you have said and looked up and posted to me!!

I have often heard less is more even with medicines. I know wonder why they would have him lower the pills to 2 and not cut the mg's in half instead.

Probably it's because most doctors don't KNOW how Mestinon really works in a person's body - that isn't a knock on doctors, but someone who hasn't ever taken Mestinon (and most people can't tolerate even a small amount of it) truly can't understand its effects on the body.

The "normal" response for medications - and we all do it "unthinkingly" - is, "If it's not working, take more; if it's working too well, take less". And for most OTC medications, you take them as needed.

Mestinon is a weird little drug, and most people in the general population would get violently ill if they took even a small amount of it. Taking too much of it will make a person - even one with MG - violently ill (and too much can lead to a cholinergic crisis); that's why they start us off with a very low trial dosage.

Because of the nature of MG and the half-life of Mestinon, it is much more important to first find out the AMOUNT of Mestinon that a person can tolerate. Once that amount has been established, you can then move on to figuring out what time interval works best for each individual patient - for some people it's 4 hours, for some it's 6 hours, for others it's 3 hours.

Each person is unique, and what works for one person will not necessarily work for any other person. MG is a highly variable disease, and because it is so rarely diagnosed, there is no such thing as a "typical" patient.

Mestinon is one of those drugs that you can take more OFTEN on one day than another (it usually depends on your level of activity more than anything else), but you CANNOT take more of at any one time. That is, if you are feeling particularly tired, you may be able to take your "regular" dosage 2 hours apart rather than 4 hours apart, but you cannot take double your dosage at one time (that could put you in a potential crisis situation).

Our bodies can only tolerate so much Acetylcholine at one time. Alice MD explains it MUCH better than I can.....

I hope that you and your loved one are able to find answers soon - and I, too, hope that IF you are, indeed, looking at a neurological condition that it is something more along the lines of MG rather than ALS.